Mugga Bugga

Surprise!

2011-02-23T13:49:00.006-05:00

It's pretty obvious I'm not very good at keeping up with this blog. When I first started, my intentions were to write about the happy times of Seamus' life but this past year has been a pretty rough one and often I found the only things I had to write about were not very happy. Don't get me wrong, even through all the difficult times, there are always moments of joyfulness and fun but sometimes just making it through the day is so exhausting, this blog is the last thing on my mind.

But now I can truly say I have something happy to write about. Cormac Richard Coleman has arrived! In true family fashion, it was not in the easiest manner. I think our family motto should be "If it can done in a more difficult way, we will find it."

I woke up on Valentines Day at 2:00 AM to a very uncomfortable sensation and realized my water had broken, 5 weeks too early. The doctor told me to get to the hospital right away. After having contractions for 7 hours with no dilation, they said I needed a C-section. I had just sent James home to take care of Seamus' morning treatments because I thought it was going to take awhile before any decisions were made but when they decided on the C-section, they meant right then. I had to tell James to quickly come back and he literally almost missed the whole thing. I was in the Operating room on the table within minutes of the birth before he got back.

Cormac was born at 9:39 am, 6 lbs, 19 inches, our perfect little Valentine. You would never knew he was a 35 week preemie.

The rest of our stay was pretty uneventful, after I got over the severe nausea and vomiting from the spinal they gave me. Mac had some breathing issues and spent a night in the NICU but nothing uncommon for a preemie. I also picked up a cough that I thought I got from Seamus when he came to visit. Seamus was just thrilled to meet his little brother.

We were discharged on Thursday and within a couple hours of being home, I was horribly sick with fevers and chills and the doc wanted me to head back to the ER to check for an infection. I spent the whole night getting all kinds of tests and they finally diagnosed me with pneumonia. I stayed in the hospital until Sunday after begging them to let me go home to my baby. They found out I didn't get it from Seamus but got it because of the vomiting which had aspirated into my lungs.

We're all home now and everything is going well. Seamus is such a good brother and can't wait to teach him everything. Pictures to come soon.

On another note, I know some people were confused because on Facebook, I had originally mentioned twins. I was pregnant with twins but we found out early on that one of them was very sick and at 15 weeks, his heart stopped. I wanted to let people know but it was a pretty difficult time and not something you can easily post about on Facebook.

For Seamus

2010-12-29T14:40:00.009-05:00

One day, Seamus is going to find out the circumstances of his brother's origins and I wanted to write down the story to help him understand.

When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly.

My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.

But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.

Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?"

If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other.

There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF.

It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist.

I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are.

I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.

In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.

Catching up

2010-12-22T16:23:00.003-05:00

It's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.

Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.

He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.

He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.

Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.

Not okay

2010-07-12T21:57:00.005-04:00

I had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?"

"Yes"

"I'm sorry, baby"

"It's okay, Mommy"

But you know what, it's not okay.

It's not okay that just the thought of pooping can make him cry.

It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.

It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.

It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.

It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.

It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.

There is just nothing that's okay about what he has to go through.
-------------------------------------------------------------------------------------

He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."

He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.

Thank you, Mary Kate

2010-06-18T11:46:00.003-04:00

We met Mary Kate McKenna last year when she did a photo shoot of Seamus for "The Littlest Heroes Project". Seamus and MK hit it off right away and although we only spent a few hours with her, we've kept in close touch.

She is getting married this weekend and this what she posted yesterday on her Facebook account:

Many of you have asked what you can do for our wedding- I have a simple request- please donate to the Cystic Fibrosis Foundation in honor of one of my very favorite people on this earth, little Seamus, who stole my heart when I photographed him and his family last year. (here's some photos: http://bit.ly/seamusc) Seamu...s (child of James Coleman and Julie Scheib Coleman) is an incredible kid- so let's use this time of celebration to help find a cure for this painful disease. Thank you all so much! http://www.causes.com/causes/469?m=9e4cc0c7&recruiter_id=398845

She is the one who should be recieving gifts yet she gave us the best gift of all. I can never repay her. She truly is amazing.

Not only is she a great person, but she's also a fabulous photographer. Here's a video I made of her photos. I've posted it before but I can watch it over and over.

Make an on-line slideshow at www.OneTrueMedia.com

Beautiful

2010-06-15T12:53:00.004-04:00

Last night we were expecting a thunderstorm after a stifling, humid day. Just around dusk, I went out on the back deck for a minute and noticed something so I called to Seamus to join me.

There were hundreds of fire flies twinkling in our yard and in all the surrounding neighbors' yards. I've never seen anything like, even out in the country where I grew up. Seamus and I stood out there watching in silence, except for a few oohs and aahs, for a very long time before the rain finally started. It was still too beautiful to go inside so we sat under the picnic umbrella and enjoyed the rain and cool breeze.

Later, when James came home, Seamus told him all about the "lightning bug show". That's one I'm going to treasure.

Conner

2010-05-20T16:23:00.002-04:00

Please help out Conner's family. They are in the unthinkable position of having to plan a funeral for their 7 year old son. Please donate what you can.

Striding

2010-05-18T13:41:00.003-04:00

This past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.

But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it.

I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money.

I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"

I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.

I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.

I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.

So I'll leave it to other people to celebrate. I just don't have it in me.

Snow bound

2010-02-05T14:45:00.012-05:00

Seamus has a serious case of cabin fever...

Snow, snow, snow

2010-02-03T21:03:00.010-05:00

Winter has been rough on Seamus. In the entire month of January, he was able to go to school only 3 times. First it was the hospitalization, then MLK Day and Parent/Teacher conferences and then the flu swept through his school so we kept him home for a few days. So he's had a bad case of cabin fever and now all the snow has added to it. We had a snowstorm last Saturday, more snow last night, and we're expected to get almost 2 feet on Saturday again.

We've tried to keep busy by playing computer and Wii games, sledding, making snowmen, and of course, drawing and cutting dudes. Today, James and Seamus took an inventory and actually counted almost 200.

Being cooped up has made him pretty snarky. He's getting more and more defiant and spending much more time on the Naughty Step. Tonight at dinner he started pounding the table and told me he was very frustrated because he did not want fish sticks.

He's also decided he's a big boy and no longer likes to snuggle before he goes to sleep. We read books and then he tells me leave. Sometimes after I leave, I hear him roaming around his room dragging his IV pole around with him.

2010-01-21T21:01:00.004-05:00

The clean out took longer than we expected. He wasn't clear until Saturday after about 24 liters of Golytely. He had a lot of malabsorption that was stuck. We go back to CF clinic tomorrow and have to discuss switching enzymes. He takes 9 Pancrecarb MS4s with meals which is already the highest dose he can take so I don't know what else they can do. He also seems to have caught something while he was in there because he's been coughing and pretty junky sounding.

Seamus has a new hobby, cutting with scissors. Santa brought him a pair of kiddie scissors and they're his favorite present, by far. Seriously, from morning until night, he cuts, cuts, cuts paper "dudes", pictures out of magazines, or anything he can find. He's surprisingly really, really good at it and we spent hours in the hospital drawing and cutting all the Disney and Nick Jr characters.

A funny hospital story: I had to leave the room for a minute so I showed him how to use the call button and told him to call the nurse if he needed her. Apparently, as soon as I left the room, he pressed it and said over the intercom for everyone to hear "Hello, my name is Seamus and I would like some crayons please."

2010-01-13T22:28:00.003-05:00

Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless.

"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.

Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely.

I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either.

I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.

Quick update

2010-01-08T09:43:00.002-05:00

We did the clean-out on Wednesday which helped a little but his tummy still hurt and he wasn't pooping much. Dr C said he needed an x-ray which we got yesterday afternoon and surprise, surprise, he is still full of poop. He wants us to do another 4 hour clean-out today. I feel like we're spinning our wheels.

Clean out

2010-01-06T09:50:00.005-05:00

A few days ago, I had a stomachache and I asked Seamus what he does to feel better when his tummy hurts. He patted his tummy and said "I do this". Over the next couple days, I noticed he pats his tummy an awful lot. When I asked him if it hurts, he told me "Mommy, it hurts everyday". We've repeatedly told the doctor who doesn't have much else to say but now that his pooping has definitely decreased too, he wanted us to start a clean out.

We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.

We'll see what happens.

Oh boy

2010-01-04T19:18:00.015-05:00

My sweet darling angel hit a boy at school today. He was playing superheroes and the other boy was the bad guy. This whole superhero thing is getting out of control.

It's weird because his teacher told us at the beginning of the year it wouldn't surprise her if there was some kind of physical altercation at some point between Seamus and this boy. This little boy was not in the class last year so he didn't know that Seamus was the "Alpha Male" and everybody followed his lead. Seamus wasn't used to sharing the spotlight. I was appalled when the teacher told us this.

When we told her all the girls loved Seamus last year, she said "Well, maybe the 2 year olds.." Again, I was annoyed. My little boy is perfect and charming so of course, the girls would still love him. Well, my charming little toddler has turned into a rough, tough boy always on full speed. It's no surprise the girls in their princess costumes and nail polish want nothing to do with him anymore. Okay, Miss Anne, you know your stuff.

Here are some pictures as promised...

I haven't posted pix in a long time so here are some of the highlights from Halloween, Thanksgiving, Christmas and New Year's (notice the hats and the "dudes").

I'm back

2009-12-30T21:13:00.006-05:00

I'm just going to pretend it hasn't been two months since I last posted and start the New Year off right.

Our holidays were very nice. We went down to North Carolina and saw lots of people. We saw my brother and his family who we haven't seen in more than a year. Seamus adores his cousins, Alex and Cassidy. We celebrated Christmas and Alex's birthday the week before actual Christmas day. We spent some time with James' sister Carol too whom we hadn't seen in a long time.

We visited with our old friends Trish and Joe and their kids. They are much older than Seamus but are they were so nice to play with him for hours. At the end of the day, he send "Mommy, this is a great play date!"

Santa was nice to Seamus. The big present was Pluto (guess who named him?), our new doggie. He's the sweetest thing but he came with a long list of unexpected ailments: heartworms, kennel cough, vomiting, and enlarged prostate. We're working on getting him better.

Uncle Rick came to help us celebrate New Years. Seamus always loves to see him. We spent New Years Eve playing the Dr Seuss ABC Stretching Game, which is like Twister for little folks, even though most of us are not so little. And of course, we made hats which is the tradition in our house for any special occasion.

Seamus' newest obsession is Shrek. He asked for Shrek toys for Christmas but Santa had a very hard time finding any so instead he got the first two Shrek movies. We've discovered Seamus is a very good impersonator. He does a mean Shrek walking around the house saying "dawn-kay" and you've never heard anything as cute as "Jingle Bells" in a little Scottish accent.

Our newest hobby is drawing and cutting out all kinds of paper "dudes". We've made hundreds, everyone from Santa to Buzz Lightyear to all the kids in his class. There is a whole sub-genre of super heroes like Super Sponge Bob, Party Man (whose super power is throwing great parties), and even Super Pillsbury Dough Boy. Today, we made Dancing Man, whose ability is to change bad guys into dancers and Bow Bear who is a bear but can change into a bee and turns bad guys into logs when she stings them.

Reading is going really well. He's picking up lots of words and is starting working on writing his letters. We still do words-of-the-day and his vocabulary is pretty impressive, if I say so myself. We were playing a game the other day that I found frustrating and I said "This is maddening". Later that night he was getting annoyed with something and told me it was "bald on the head, that means frustrating Mommy."

He started taking a tap/ballet class. He's the only boy with 14 girls but he doesn't seem to mind. Some days I can tell it takes a lot out of him but he has fun.

His health has been relatively good. We've been really lucky respiratory-wise, no bad colds to speak of but he's gone back and forth a lot to the GI doc and had another scope. Even though he's in pain, they couldn't find anything new so he's still on the same regimen. Everyday it's a struggle with pooping and we know it can't go on like this. It shouldn't have to always hurt and you can't imagine how hard it is to have nothing comforting to say when he says "It hurts Mommy."

I have lots of pictures which I'll update soon, I promise.

Memorable week

2009-10-25T13:13:00.004-04:00

Last week started with a lunch trip to Burger King for James, Seamus, and myself. Surprisingly, it's one of the few fast food places where Seamus can get milk-free, soy-free, beef-free, and pork-free food and they give away good toys.

As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead.

We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.

On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.

Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.

We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected.

Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it.

He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.

Long time

2009-10-15T16:16:00.002-04:00

Well, I've let it go too long again.

Seamus had a nice birthday party, even though it got rained out. Somehow we crammed 16 little kids with parents and siblings into our house and still had a good time. It was Spiderman themed so he had a Spiderman decorations, Spiderman Pinata, Pin the Sticker on the Spiderman Game, and of course a yummy Spiderman cake made by his Aunt Meghan. The kids all made super hero masks and had to pick out a super hero name for themselves. Seamus was "Doggie Man."

My birthday was the next week and we had a nice weekend again. Seamus has become obsessed with Toy Story so we went to the 3-D double feature of Toy Story Parts 1 and 2. In that last few months, I've seen both those movies at least 20 times each so having to sit through a marathon was pretty rough, but Seamus loved it. We came home and the first thing he wanted to do was watch Part 2 again. He got Woody and Buzz dolls for his birthday, and he is truly never without them.

He had a pretty rough week after that, GI-wise. He had about 2 good weeks after his hospitalization before the same old symptoms came back. He had x-rays last Friday which showed lots of gas but supposedly not too much stool. Since he's complaining about pain again (it hurts like wood again, no more soft pillows), his doc put him back on the suppositories. It it the worst torture for him but he knows they help. Even while he's sobbing when we do it, he says through the tears "that's better, that's better." He is still not eating or pooping much and his stoma around his feeding tube is leaking which I don't think could be related to rectal ulcers so I think we'll be returning to the doc soon.

I meant to write this story down weeks ago so I wouldn't forget it. For a few days in a row, I could not get the theme song from "The Imagination Movers" out of my head. It was making me crazy. Seamus was trying to help me and said "Why don't you draw a picture of the song so then it will get out of your head and onto the paper?" I thought that was a pretty clever idea.

Happy Birthday #4

2009-09-28T16:14:00.005-04:00

My Darling Seamus,

Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.

This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.

This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.

You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.

This is one of our favorite verses from one of our favorite books:

"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!

I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy

Goodbye My Friend

2009-09-25T13:06:00.005-04:00

We lost a very close friend this week. Our cat, Izzy, had to be put to sleep on Tuesday because he had "thrown a clot" which means somehow a blood clot found it's way to his hind end and we found him paralyzed on the basement floor. By the time James got him to the vet, his heart was giving out and his lungs were full of fluid.

Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.

He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.

Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."

Good bye, Izzy, my love. We will all miss you terribly.

Thanks

2009-09-16T09:24:00.005-04:00

I want to thank everyone for the kind and encouraging comments. I have not been very good at keeping up with other blogs but I know everyone has their own issues that they're dealing with so I really appreciate people taking time out to think about us.

Seamus is doing great. He has a little cold but that's not holding him back. I knew he really was feeling better when he told me last night that going potty "didn't feel hard like wood any more. It feels soft like a pillow."

We're starting to plan his birthday party in a couple weeks. It's going to be all things Spiderman! We're going to have two bouncy houses in our backyard but I have to think of other Spidey related things. If anyone has any clever ideas, please let me know.

And, oh yeah, he's gained two pounds!

Home Again

2009-09-08T22:14:00.009-04:00

Seamus was discharged on Saturday afternoon with a PICC line to finish the antibiotics for his pneumonia and a treatment plan for the GI issues, which still seems a little uncertain.

They were shocked that in less than 24 hours between the colonoscopy, when he was clear, and the CT scan, he had gotten all blocked up again. He has colitis, which is inflammation of his intestinal tract, that is making his constipation worse, and then the constipation is causing more inflammation. It's like the chicken and the egg. They are treating the colitis with anti-inflammatory drugs but so far, he is still in pain and not pooping very much. We also have to give him a steroid suppository every day for the rectal ulcers which is pure torture for him. It breaks my heart to hear him beg us each day not to do it. Finally, he has H. Pylori, which causes peptic ulcers, but he has it in his intestines. The treatment is pretty heavy duty so they want to wait until the pneumonia treatment is done. So basically, the pneumonia is the only thing that is really under control.

Tomorrow, Seamus starts pre-school again. It's only a couple hours a day, 3 days a week so we are hoping he can handle it. He's really looking forward to it and we would hate to have to pull him out.

Here are some pictures of our latest vacation in Williamsburg and VA Beach. I'm so glad we could fit it in before he went into the hospital.

Latest

2009-09-03T07:08:00.004-04:00

I am just worn down and haven't been able to post. Facebook is different because that's short little updates but when I sit down to write a blog post, I just feel overwhelmed.

The last time I wrote, Seamus had gone back to the hospital for the 2nd time in a month and sent home again with a "It's just a virus" diagnosis. We were able to go on vacation but by the third day, Seamus started again with the uncontrollable diarrhea and terrible cramping. It was bad, all over the hotel room, in the hotel pool area (we just barely got him out of the pool in time.), ... When we got back home, he started in with the fevers again and then the constipation.

We took him into his GI doctor to get bloodwork done again and again were told, "It's probably only a virus". Who gets a virus that keeps coming back every 2 weeks with the same exact symptoms? On the way home from Baltimore, we got into a car accident. It wasn't too bad but my neck and back were stiff and very sore so they took me away strapped to a flatboard to the hospital. Seamus really was upset by this. So not only was he feeling really sick, he was emotionally a wreck. We finally made it home late that night.

Saturday, he was no better and by the nighttime he was complaining of severe pain in his stomach, especially when pushing to poop, and vomiting. After waking up at 1:00 AM in inconsolable pain, we decided we couldn't wait for the bloodwork to come back again so we headed back to the ER.

I'm glad we did because they took one look at the x-ray and said he has pneumonia. But the part that really pissed me off is they looked back at the x-ray from our ER visit two weeks ago and said "Oh, that shows pneumonia too. Sorry, we must have overlooked it." What!!! I understand pneumonia can present differently and isn't always clear cut but in a kid with CF, wouldn't you just err on the side of caution and assume it is, especially with fevers of 103 plus???

He also had some more poop that appeared stuck so they wanted another clean out. Since he was admitted under the Pulmonary service because of the pneumonia, they called the shots. Normally he is under the GI service. Well, they have different ideas of what a clean out is. Pulm decided he needed to be NPO, instead of on a clear diet, and ran the Go-Lytely at ridiculously high speeds which caused Seamus a lot of pain, even vomiting. GI says clear is when there are no more particles. Pulm says clear is when it looks like water. By Tuesday, he was still on it, even though GI thought he was done and could eat. The poor kid hadn't eaten or even had water since Saturday dinner.

Not only that, I walked into the room after going to work on Tuesday, and saw his left arm swollen about three sizes bigger than normal. His IV had infiltrated and they hadn't noticed. It was bad, the nurse kept running around telling everyone "It's massive! It's massive!" The "antidote" to this is to give 5 shots in his hand at the exact same time which is supposed to soak up the fluid. Seamus is traumitized by any needles since he's been pricked so much for IVs and bloodwork and seeing 5 nurses all coming at him with needles in their hand was too much for him to handle.

Between the pneumonia being overlooked for 2 weeks, the two teams not working together and the IV incident, I totally lost it. Seamus has been through enough and all of these things were all preventable. I know I'm his advocate and need to keep on top of everything because he can't, but it is so tiring.

Since most of his symptoms were more GI related than pneumonia, they think there is some other kind of infection going on, so yesterday when they put in the PICC line so we can take him home on IV antibiotics, they also did a bronchoscopy, endoscopy, and colonoscopy. The last one was at our request, it hadn't occurred to them. Thank god they did it because that procedure revealed the most information.

Seamus has rectal ulcers, and inflammation (almost to the point of being totally closed off) of the TI area where the small and large intestines come together. It's interesting because that's where he gets his blockages every time, which now makes sense. He may also have peptic ulcers and IBD. I feel so bad for him and all the times we forced him to sit on the potty and push.

Today they are going to do a CT scan of his abdomen and pelvic area to see if there are any abcesses that they might have missed in the scopes.

But again, Pulm came last night to talk to us and they knew nothing about the rectal ulcers and the TI issue and were just going to start him on treatment for peptic ulcers that GI never mentioned to us. So that' s very concerning that they dont' seem to be on the same page.

I have no idea how long we'll be in here. Nobody has even started talking about discharge. Seamus is in good spirits, better than the rest of us.

So there you are, caught up. I'll try to update more often.

ER visit again

2009-08-19T15:58:00.003-04:00

Seamus had a fever of 100-103 degrees from Wednesday until Sunday. He also was having major GI problems. After two weeks of uncontrollable diarrhea, he was constipated and in much pain. He started complaining about food being stuck in his throat and gagging and vomiting when he ate. On Saturday, we went into the pediatrician who declared he had no respitory issues but took a white blood cell count because of the fevers. He had a count to 20,000 which is extrememly high. So off to the ER we went.

They did the regular battery of tests, x-rays, etc. They couldn't find anything that would cause the fever and sent us home.

Since then, he's finished a round of the antibiotics he was put on for the intestinal bacterial overgrowth and his world is getting back to normal. I'm not a doctor but my diagnosis is the antibiotics caused all kinds of upset in his GI tract, which is a common side effect. This in turn caused his eosiniphilic esophagitis to kick into high gear causing the gagging and vomiting. Eosiniphils are white blood cells so it makes sense his count would go through the roof and increased white blood cells cause fever.

He is still vomiting occasionally but I think his EE is finally starting to calm down and his pooping is getting back to "normal", or at least his normal. It's a good thing because we are planning on going away this weekend to celebrate James' birthday and usually our travel plans are thwarted by some medical emergency.

Seamus is getting back to his feisty three old self. On the one hand, that's great, but they're not kidding that now the terrible twos have become the terrible threes. I guess I can't complain too much, at least he's not sick anymore.

2009-08-13T19:30:00.006-04:00

So what have we been up to? Not a whole lot. Seamus has been sick off and on pretty much the whole summer and hasn't felt up to much. Currently, he has a fever that he's had since yesterday. We're not sure what's going on.

It's not all bad. We are very excited about the VX-770 news. For the first time, I really believe a cure is possible in Seamus' lifetime. I've always hoped for one but deep down I don't know if I really believed it.

Since we've been home bound, we've been working a lot on reading. He's not truly reading but can pick out words by sounding them out. Sometimes we look at the pictures and come up with our own stories based on people's expressions.

His growing vocabulary is cracking me up. His three favorite things to say are "actually", "suddenly" and "well", like "Well, actually, I do not want hot dogs for lunch. Suddenly, I would like chicken nuggets."

Here are a few pix from the past few weeks:

Moon light

2009-08-04T21:50:00.003-04:00

The last few nights have been pretty cloudy so we haven't been able to see the stars. Last night as Seamus and I cuddled in the dark and looked out the window before he went to bed, I heard a little voice say:

"Moon light, Moon Bright,
First moon I see tonight.
Wish I may, wish I might,
Have this wish I wish tonight.

I wish I had a merry-go-round in my house."

Why?

2009-08-02T10:02:00.005-04:00

We were looking at the beautiful pictures of our bloggy friend, Natalia, and her baby, Scarlett, yesterday. I pointed to Natalia and said she has CF like you.

Seamus asked "Does the baby have CF too?"

"No, just the Mommy."

"Why?"

"Some people have it and some people don't, just like Daddy and I don't."

"Do I still have CF?"

"Yes, Honey."

"Why?"

This is getting really hard.

Not much to report

2009-07-27T22:17:00.007-04:00

I've been very bad at updating lately. There hasn't been a lot to say. Seamus seems to be feeling better but still not 100%. We went back to the GI doc on Friday and the latest news is he has SIBO, Small Intestinal Bacteria Overgrowth. It's caused by malabsorbtion and slow gastric emptying. It basically causes a lot of gas, discomfort and stomach distention. He's started on two different antibiotics which he'll cycle through indefinitely, hoping he doesn't get resistant to either.

All of this is starting to affect him more than just physically. At the doctor's office, James and Seamus were reading a book about pooping on the potty. Half way through Seamus asked him to stop and told James it makes him sad he can't poop like other kids. And last weekend, when we asked him to go to the pool, he kept crying and saying he didn't want to go. Later he told me, "I want to go to the pool, but I just don't feel like it."

We have had some fun times in between the down times. We stumbled across a really cute little Mom and Pop amusement park, Adventure Park USA, a week ago. We were on our way to somewhere else but that looked more fun, so we stopped. It's in the style of an old Western town. Seamus has been calling it the Cowboy Town.

Seamus and James went to the Baltimore Zoo last week. Seamus was very enamored with the chimpanzees and baby elephant and told me all about it as we snuggled in bed that night. He also felt up to two playdates and a birthday party this weekend so that was a great improvement.

Seamus still amazes me and everyone who meets him everyday. No matter what he goes through, he's always ready with hugs and kisses. I'm so proud of him.

Deja vu all over again

2009-07-16T23:27:00.005-04:00

I guess the title of my last post was wishful thinking. He came home on Wednesday the 8th and by Fiday the 10th he was puking again. I thought it was because our neighbor was nice enough to bring over a dinner for us on Thursday which she assured us had no milk, but apparently that didn't include cheese. We didn't realize until Seamus had eaten half a bowl and then complained that his stomach hurt all night. He threw up in CF clinic the next morning but we really didn't think anything of it until he puked twice on Saturday. My last post I wrote we were going to the Aquatic Gardens but we never made it there because he threw up in the car 2 minutes into the drive. He kept up with the puking until Tuesday when Dr C said he didn't think the milk incident could be the cause and to bring him back into the ER.

So Tuesday night, we went through the whole routine again with the brand new doctors and they couldn't find anything in his x-rays or blood work. They came up with the idea that he caught some kind of stomach bug while he was in the hospital but I don't buy it. He was only puking when trying to swallow or use his feeding tube which is exactly how he was acting before his eosinophilic esophagitis was diagnosed. And I've never seen a stomach bug last a week. I think the milk really caused his EE to flare up which had a whole domino effect.

The good news is he hasn't thrown up in two days but he is very lethargic and doesn't ever want to leave the house. He still has issues with swallowing and has no appetite. So we haven't been up to anything fun. I'm not going to jinx it by saying what our plan is for tomorrow.

I want to include at least something positive so here's some pictures of the July 4th weekend before all the hospital stuff began:

Back to Normal

2009-07-11T10:27:00.002-04:00

Seamus came home Wednesday evening and has been just relaxing since. He had a CF clinic appointment on Friday. I had missed so much work that I couldn't go so James took him alone. He's gained a pound and a half in 2 months which is great considering he hadn't eaten anything for 4 days while he was in the hospital. His coughing has increased a little probably due to the beginning of an ear infection so we won't be going to the pool today. After the appointment, we always like to take Seamus on an "adventure" so they went to see "Ice Age 3". Seamus gave it a thumbs up.

We may go to the Kenilworth Aquatic Gardens today. It's a beautiful place right in the middle of an urban area that most people don't know exists. He can run around but not be around a lot of people which I think is what he needs.

Day 4

2009-07-08T07:24:00.003-04:00

It's day 4 of the hospital stay and he's still pooping. They plan on doing another x-ray this morning to look at the progress. Yesterday, he passed what looked like gobs of rubber cement. I think that had to be good to get that out.

Seamus has been doing well, considering everything he's going through. To top it off, he now has conjunctivitis in both eyes and the right one is almost swollen shut. The poor guy. Because they've pumped 10 liters of Go-lytely into him so far, he's swollen up like a balloon. Between that and his eyes, he looks like a washed up prizefighter.

I wasn't kidding about Toy Story. He's watched Parts 1 and 2 at least 5 times each so far. It makes him happy so I don't complain. He did watch Snow White once too and I've never seen him laugh so hard. Last night before he fell asleep, he was lying in bed in the dark giggling and talking about Dopey falling down.

Hopefully, my next post will be from the comfort of home.

Update from the hospital

2009-07-06T17:50:00.007-04:00

Well, it finally caught up with him. All these months of home clean outs that never fully cleaned him out has left Seamus almost totally blocked and back in the hospital. It never fails, every July he ends up in the hospital. For those who don't frequent hospitals, that is the worst month to be in one. All the new doctors start and there is lots of confusion. Last year, we had a nightmare hospitalization but this year, it's been okay so far.

At first, we got quite a scare because when I called Seamus' GI doc and he heard Seamus sobbing in the background, he said "That is not the Seamus I know. Get to the closest hospital and get an x-ray now." When they looked at the x-ray, we were told he had a full obstruction and needed surgery but that hospital didn't have a peds surgeon so we were going to be transferred to Hopkins, which is our normal hospital. They wanted us to go in an ambulance because if he "coded out", they could help him. That was pretty hard to hear but after waiting 4 hours for them to come, we decided we'd risk it and drive the 40 minute drive ourselves.

When they looked at the x-ray here, they said it wasn't completely blocked and no surgery was needed. This has happened to us on numerous occasions. I really think they need to have better classes on reading x-rays in medical school because no one seems to agree on what they are looking at. Seamus was put on the full blown Go-lytely treatment to break it up. He's doing well, just hanging out watching Toy Story over and over and over, pooping, lots of pooping and charming all the nurses.

Prior to all this, we had a nice holiday weekend. On Friday, we went to the University Town Center for a picnic lunch and Seamus ran through the fountains with lots of new friends. Then we came home and made brownies topped with bright blue frosting, four kinds of sprinkles and jellybeans to get ready for Uncle Rick's visit.

Seamus and Uncle Rick spent lots of time playing football, tennis, the Wii ... I think Uncle Rick had a hard time keeping up. On Saturday, we started at our town's Fourth of July celebration and then headed over to our pool. It would have been a really nice day if Seamus hadn't woken up at 11:00 PM crying in pain, begging us to turn off his feeding tube.

Hopefully, we won't be here too much longer but Seamus has said he will not go home until we get the Toy Story DVD.

Back to reality

2009-06-29T23:12:00.003-04:00

Seamus is having a very hard time getting adjusted to being home. His sleeping pattern has been crazy. The first few mornings after we got home, he woke up very early but then on Sunday he slept until 11 AM. This morning he got up at 4 AM. Right now as I write this at 11:15 PM, he is laying wide awake in his bed. While we were away, his medications and treatments were not always on schedule either and he's definitely feeling the effects of that. He started a new cough today and has been complaining of a tummy ache.

So we have not been doing very much except relaxing at home. Seamus didn't even want to go to the pool over the weekend. I hope he just needs to rest up and he'll be back to his normal self soon.

Los Angeles Trip

2009-06-25T22:46:00.010-04:00

We had a great time although you knew we wouldn't get through this trip without a visit to the ER (more on that later).

Seamus seemed to be doing better a few days leading up to the trip but as we were waiting to board the plane in Baltimore, he vomited all over the Food Court. So we quickly got him changed and onto the plane where things went very smoothly. He loves to fly and was such a good boy during the 7 hour trip. After landing in LA and getting our rental car, we weren't on the road more than 10 minutes when he vomited again, huge amounts all over the car and rented car seat. We thought we were in serious trouble then.

We took it easy that night and got ready to go to Disney the next morning. During breakfast in our very nice hotel room, Seamus let loose with the puking again. He said he felt good so we continued with our plans. Disney ended up being great. The weather was a little cloudy and low 70's which kept local people away but was great for us. We didn't stand in line more than 15 minutes for any ride and Seamus got to meet and hug almost all the Disney gang: Mickey, Minnie, Goofy, Winnie, Tigger, and Chip N Dale. He was thrilled but still talks about how we missed Donald.

That night we headed up to LA where my conference was. We were all exhausted from jet lag and all day at Disney so we just wanted to go to bed. Ha ha, not in the plans. James got us each a bottle of beer for dinner and then realized we didn't have a bottle opener. He decided to use his car keys and ended up slicing his finger open across the base of his finger nail. The blood did not stop gushing so we called the hotel doc who thought he might have sliced his artery. We had to go to the ER immediately. By now, it was 8:30, or 11:30 by our internal clocks, and Seamus still hadn't eaten dinner. We all packed up and went to the ER. It ended up okay, not the artery but James needed stitches and 14 shots in his pinkie finger so they could tear his nail off. Yuck! After leaving there and getting his prescription filled, it was midnight, or 3 AM to us.

The rest of the trip was a little less stressful. We went Venice Beach and the Santa Monica Pier, spent time with some long lost friends and James and Seamus hit Griffith Park and the Zoo. It was fun but I'm glad to be home.

Here are some pix of our great time:

2009-06-15T22:11:00.005-04:00

We had a nice weekend. Seamus went to two birthday pool parties and had a great time. He's also getting excited about our upcoming trip to Los Angeles and Disneyland this weekend.

The change in his feedings is still not going well. He has not slept through the night once since we've made the change and his appetite has severely decreased, I think partly because his stomach hurts and partly because he's full from the extra tube feeds. His stomach has been distended and gassy because he's not getting enough enzymes at night and yesterday he had a huge watery accident right in the middle of family room which embarrassed him terribly. He almost started crying and said "This can't happen at Lilly's birthday party!" He actually asked to wear a diaper which he hasn't done in the daytime for months.

I'm a little worried because every time we plan a trip, something seems to happen. We have lost hundreds of dollars in canceled plane tickets and hotel rooms. I'm keeping my fingers crossed and we're still tweaking the regimen. Hopefully by Friday, he'll be doing better.

Next post, I promise, no more poop talk!

Unexpected

2009-06-10T09:21:00.004-04:00

Yesterday, Seamus went to the GI doc to have his tube looked at. It is infected so they took a swab to culture. But the big shock was his weight has gone down again. The last time he was weighed at GI clinic was 6 months ago and he's back to the same weight. Considering he already has a feeding tube, it seriously concerned Dr. C.

He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.

So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.

And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.

Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.

I've got a golden ticket

2009-06-07T09:12:00.002-04:00

Last night, Seamus, my mom and I went to a local elementary school production of Willy Wonka and the Chocolate Factory. Seamus is hooked.

As soon as the kids stepped on the stage, Seamus lit up. He clapped harder than anyone in between scenes and laugher louder, especially when Charlie burped in the Fizzy Lifting Drink Room. He kept leaning over to me to kiss me on the cheek and say "Thanks, Mommy, it's a great show!"

But the greatest thing was WonkaVision. He could not stop talking about how the boy was on the stage one minute, and then, magically, he was in the tv. "Mommy, how do I get in the tv so everybody can watch me?" I've been telling you he's a ham.

BTW, I talked with the GI doc on Friday. He wants to see him on Tuesday if the site doesn't look better. The Bacitracin seems to be helping some, but it's still kinda gross.

Another g-tube question

2009-06-05T10:39:00.002-04:00

This is a question to g-tube users and/or caregivers. Others be forewarned, it's pretty gross.

Seamus has had his g-tube for more than 2 years now and really, other than having it needed to be replaced about 8 times for various reasons, he really hasn't had any major problems like infections. But the last few days his stoma has been getting pinker (which has now spread) and last night he really started to complain that it hurt when I touched it, especially when I try to rotate it. It also had some yellow gunky stuff oozing out.

We usually put a mixture of Maalox and Desitin on it and yesterday I did Bacitracin but they haven't helped. He also has started complaining about pooping hurting again and gagged on his enzymes this morning which could be completely unrelated.

I have calls in to the GI nurse and doctor to see if he needs to be seen or just needs some stronger antibiotic cream but sometimes it takes a while to hear back. Since we don't have lots of experience with this, I don't know if it's okay to wait or if we should try to get him in to his pediatrician right away. Any suggestions?

Just cause...

2009-06-03T14:49:00.003-04:00

I haven't posted any pictures in awhile.

New Song

2009-06-01T21:56:00.002-04:00

Seamus' latest favorite song:

Was a farmer had a dog
Underpants was his name-o
U-N-DER P-A-NTS
U-N-DER P-A-NTS
and Underpants was his name-o

I'm not kidding, we're seriously obsessed with toilet stuff in this house.

Mommy laid up

2009-05-29T17:10:00.005-04:00

Yesterday, we were all ready to go get Seamus' x-ray when I bent down and my back completely went out and there was no way I was getting up. It was quite a logistical nightmare because we were still waiting to hear from the GI doc who was supposed to send an order to the X-ray place and then after the x-ray, we were supposed to go the pediatrician to review the film. So my not being able to move really put a wrench in the plans. To make a long story short, somehow I got to the doc with my mom basically carrying me while James and Seamus did his stuff.

The good news is the x-ray was clear so Seamus' treatment seemed successful, but the bad news is I'll be in bed the next few days on major drugs. It supposed to rain for the next few days so at least I won't be missing out on good pool days. But I'm not a good patient, I keep thinking, "Oh, my back feels better" so I get up but after about 10 minutes, I realize it's a bad idea. Seamus is being a good helper filling my water glass and bringing books and games in here to play so I won't be lonely.

Clean out

2009-05-27T20:50:00.002-04:00

Please think poopy thoughts for Seamus. He's in the midst of another home clean-out. He had one a month ago which obviously didn't fully do the trick because he's right back to where we started.

This time we insisted on having an x-ray done after the treatment so we could prove to them that one and a half liters of Go-lytely at home isn't nearly enough. We're getting one tomorrow.

Pool Plan

2009-05-25T20:32:00.004-04:00

First, I want to thank Natalia for her very honest and helpful comments on my last post. It confirmed a lot of what I already thought and made me feel better about being so obsessive. I think sometimes the doctors are afraid be brutally honest with the new CF families because they think we'll freak out. It's a fine line between letting him be a "normal" kid and keeping him safe and sometimes it's hard to do both.

We've come up with a plan for the pool. We found out the girl is 11 and has active MRSA so we are going to try to go to the pool in the morning during Toddler swim when she won't be there. If we are there when she is there, Seamus will go with James to the changing/bathroom area and won't go into the ladies room. Since he spends most of his time in the wading pool (he calls it the Navy pool) or the little kids' playground, he shouldn't be exposed to her.

Other than hanging out at the pool, we didn't do much else this weekend. Seamus hasn't been feeling very good and hasn't been up to his normal crazy antics so it's been pretty calm around here.

Sensitive question

2009-05-23T20:37:00.004-04:00

We joined a pool today and spent all afternoon there. It's a great place, very laid back, not "pool club" like at all. More like just a big party in someone's back yard with music, grills, and pools.

I was wearing my Great Strides t-shirt and when I walked in, a girl about 10 saw it and said "I like your shirt." I said "Thanks, my son has CF" and she said "Me, too." I was a little surprised and I didn't really know how to respond. This has happened to me on a couple of occasions when Seamus has been with me and my first reaction is to want to grab him and pull him away from them, but of course I don't.

And what do you say to that? "Oh, I'm sorry to hear that" or "Wow, what a coincidence?" What I really want to say is "What did your last culture grow?" I'm mainly just worried about cepacia but how do you find that out without sounding rude? And she probably wants to know what Seamus is growing too but I can't just blurt it out. Seamus is going to run into this girl all summer and it's always going to be on my mind.

Seamus' Littlest Heroes Photo Shoot

2009-05-21T23:19:00.002-04:00

Okay, I know I'm biased, but are you kidding me with this cuteness?

Make an on-line slideshow at www.OneTrueMedia.com

2009-05-21T08:55:00.003-04:00

The last four nights Seamus has ended up in our bed. The first night he just spent a few minutes but it has escalated into last night's sleeping all night there after waking up screaming in pain. He was unconsolable for about 10 minutes until he just passed out from exhaustion. This morning he woke up and seems fine but this is usually the first sign of a bigger GI problem. We'll see what happens.

On another note, I held off from Facebook as long as I could but I signed up yesterday and I'm already hooked. If I don't update this blog much, you'll know that's where I am.

Seamus' new joke:
Why did the chicken cross the playground?
To get to the other slide!

Great Strides and Faeries

2009-05-18T20:31:00.012-04:00

Our Great Strides Walk was great! Team Go Seamus Go! had about 30 people walk and made $3400. The weather started out a little shaky but actually ended up being a nice day. Thanks again to everyone who donated and/or walked with us.

The only issue I had was it was at a park with a big playground and all the kids were playing together. They had stickers for the kids with CF to wear so we could keep them apart but Seamus was about the only one wearing one. I mentioned being worried to another CF mom and she acted like I was totally overreacting. Do they take precautions at other GS walks and was I being too concerned?

Here are some pix from the day:

Yesterday, we spent the day at the Maryland Faerie Festival. Very interesting, sort of like a mini Renaissance Fair. Seamus had a blast and really enjoyed talking with all the different people. And I do mean different. My first reaction when seeing some of them was, truthfully, not the most open minded but Seamus is so open to everyone, it really made me stop and think. They're not hurting anybody, so what if they're grown men and women dressed like elves and fairies.

Mothers Day and Littlest Heroes

2009-05-11T23:25:00.003-04:00

I had a great Mother's Day yesterday. We met with Mary Kate McKenna, a fantastic photographer who did Seamus' Littlest Heroes photo shoot. If anyone needs a photographer in the DC/Frederick MD area, I highly recommend her. Here are just some of the great pix she took. Seamus absolutely loved it and was vogueing it up. I think I saw a few "Blue Steel" moments.

Tonight, we had our fundraiser at Franklin's. It went well, we'll find out tomorrow how much we've raised. It stinks that his nursery school is doing a fundraiser at the same restaurant tomorrow so lots of his classmates didn't come tonight but I think it was successful anyway.

Clinic visit

2009-05-08T13:11:00.003-04:00

Woo Hoo! Clinic went great this morning. Seamus has gained a pound and grown an inch! So now he's at 41st percntile for height and 66th for weight which is an overall BMI of 78. Can't ask for better than that. His lungs sound good and hopefully his culture will come back clean since he's been on Omniceff for the last week because he was having increased cough.

We talked a little about his GI problems these last couple of weeks but the CF doctors really don't have much to say about that. Seamus' GI issues are so extreme that they haven't dealt with anyone like him so they leave it up to the GI folks. But today he seems to be pain free and is pooping so we're not complaining.

A funny story:
Seamus is a big fan of classic rock music. Often while riding in the car, he asks me to stop the radio on a station that plays lots of AC/DC, Cars, Eagles, etc and we usually rock out to a few songs. This morning we sang along with Paul McCartney and Wings. A while later, Seamus told me his favoite song was "Bad Dollar Rug". It took me awhile but then I realized that's a much better title than "Band on the Run."

Update

2009-05-05T12:52:00.002-04:00

Seamus seems to be doing okay. He hasn't had any more weird problems with his g-tube. I think removing his old one and reinserting a new one helped because it's now in the correct position, that is actually in his stomach. But something is still not right. It's not one thing, but just overall, I have a feeling something is wrong.

He's vomited only once since Sunday and he isn't complaining of pain but he's just not himself. He seems tired and doesn't want to leave the house. He actually cried and begged not to go to soccer class yesterday, which is not like him at all. Pooping still hurts, he's back to being constipated and he has hardly eaten anything in days.

I just hate this. There's not much the doctor can do just looking at him and his symptoms aren't bad enough to go to the ER, yet. They say if he's in pain to take him in but Seamus is so used to pain, he just never complains. So we wait...

G-tube question

2009-05-02T19:50:00.006-04:00

Something strange happened today. Seamus complained a few times about his stoma, the site of his g-tube, hurting. It was a little red so we put cream on it. When it was time for his Miralax treatment this afternoon, I removed the cap on his button to plug him in and he said that hurt. When you open it, the pressure is usually released which should make it feel better, not worse. His pump is run really fast for his Miralax, 500 ml/hr, but he doesn't usually have a problem with it. Today, he didn't tolerate it very well and we noticed his stomach looked odd. Right above his belly button, an area seemed to poof out, like a two inch vertical ridge. After his treatment was over, the ridge went away and he said it didn't hurt any more. I'm wondering if it could be a hernia? He also has a scar from stomach surgery in the same area so maybe his intestines there are weak. He has so much pressure on his intestines all the time, between the DIOS and all the medicine we pump in him at fast speeds.

Has anyone with g-tube experience ever seen something like this? He gets another Miralax treatment tonight at 500 ml/hr and then his feedings all night at 65 ml/hr. I'm afraid to push it until I can talk to the docs but he really can't miss a dose.

Update: I spoke with Dr C, Seamus' GI doc, and he thinks it might be that his stomach has separated from his abdominal wall, which is not a good thing. This can happen right after a g-tube is placed, but not usually 2 years after, like Seamus. He thinks his tube was pushing the fluid into this separated area outside his stomach cavity which was causing the bulge. We replaced the tube (or I should say James did because I can't stomach it (no pun intended)). If it happens again tonight, we'll need to stop his feeds and take him into the ER tomorrow.

Heart

2009-04-27T13:32:00.004-04:00

I would love to see the world through Seamus' eyes. We went to the movie "Earth" yesterday, which is like the Discovery series "Planet Earth" and shows animals in their natural habitat. I was a little worried because I read some parts were scary for little ones. I tried to warn him ahead of time that if he was scared I would cover his eyes or we could leave. No reason to worry.

In what is probably the scariest scene, a cheetah is hunting a gazelle. Everything is in slow motion with the two animals running side by side. Seamus thought they were playing. The cheetah catches up to the gazelle and grabs his hind end and pulls it towards him. Seamus said "Oh, he loves her." Then in slow motion the cheetah embraces the gazelle and slowly his mouth reaches for the throat. Then the scene cuts away. Seamus said "Oh, they were hugging."

Later in the day, I let him run through the sprinkler in our front yard and before you knew it, we had all the neighborhood kids joining him. Seamus ate it right up and played the perfect little host, even though most of the kids were about 9 or 10. He met a new boy, Joey, that he thought was the bees knees. Eventually the sprinkler activities turned into a squirt gun battle. His greatest love, Stephanie, who can usually do no wrong was trying to sneak up on Joey and was enlisting Seamus' help. She told him to get Joey because "he was a bad guy". Seamus stopped in his tracks and yelled "He is not a bad guy, he's a really good guy."

I just love how he doesn't see the bad in anybody, a cheetah or his new pal Joey. Everybody gets the benefit of the doubt with no preconceived notions. Maybe it's just three year old innocence but I like to think it's also his huge heart.

BTW, we ended up doing three clean-out treatments at home. They were not very successful but seemed to temporarily do the trick. We have to continue to watch him closely.

2009-04-24T22:02:00.002-04:00

Sure sign our household is obsessed with poop, Seamus' new joke:

"Why did the chicken cross the road?"
"To get to the toilet."

Again with the poop

2009-04-24T09:56:00.003-04:00

Warning: Lots of poop talk ahead

Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.

So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.

Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.

Little things

2009-04-22T22:00:00.009-04:00

I don't listen to country music very much, not because I don't like the music but because it makes me cry every time. Tonight on my way home from work I was stuck in traffic (what else is new?) and was flipping through the radio stations. I heard a song that sounded good (It Won't Be Like This For Long) and before I knew it I was weeping. Damn you, Hootie, damn you!

These past three and a half years have gone by in a blink. Because I know it won't be like this forever, I want to remember everything I can, even the little things. Like Seamus' two new friends, Gooputz and Har Har, who he is very close to, literally. Gooputz ("Not Gupta, Mommy" delivered with an eye roll worthy of a teenager) is his right hand and Har Har is his left hand and God forbid you mix up the two. They like to climb on jungle gyms and don't like to go to bed.

I also don't want to forget the funny way he has of naming his stuffed animal "dudes". He used to have very literal names for them all like Doggy, Sheepy, and even Dinosaury. Then he got a little more sophisticated with Doggeray, Sheepery, etc. Now he just blurts out a sound like Satsa, Totsi or Gooputz. But the weird thing is he remembers them all even weeks later and never gets the names mixed up.

We went to another Easter Egg hunt last weekend (they had some scheduling problems) and Seamus had a great time, especially on the zip line. Here are some pictures:

Easter 2009 and Fundraiser

2009-04-14T21:05:00.015-04:00

It was nice to have a little break from the CF world and just concentrate on toddler life. We had a nice relaxing Easter weekend. Saturday, we went to a birthday party for Seamus' friend, Brigid, and had an Easter egg hunt. Then we came home and decorated our own eggs which Seamus loved. Sunday, the Easter Bunny made Seamus work for his jellybeansby leaving him clues like Blues Clues. He came downstairs and found the first egg with a picture inside of the washing machine. At the washing machine, he found another egg with a picture of the computer. Then at the computer, he found an egg with a picture of the tv. Finally, under the tv he found his basket. He got a big kick out of figuring it out. Later in the day, we all went to the park and had a picnic and rode the carousel and train.

Today, we got some great news! One of the local restaurants in our area, Franklin's in Hyattsville, has agreed to do a CF fundraiser for Team Go Seamus Go! It's a great place with microbrew and yummy food, especially the potpie. It's going to be on May 11th. They will donate 20% of your bill to CF all day. They also have a really fun general store with all kinds of funny gifts, jewelry, wine, etc all of which will be included in the fundraiser! I'll post more details later but if you're in the Hyattsville MD area on May 11th, stop by.

Taking a Break

2009-04-10T09:26:00.006-04:00

Thanks to Lil' Chris's Mom at A Cure for Lil Chris and Courtney at The Tale of Olivia's 65 Roses for this blog award:

It's for having a blog that "shows great attitude or gratitude". Truthfully, these days I'm having a difficult time with that. The internet is a double edged sword. On the one hand, I've found so much support and comfort in the CF community but on the other hand, some of the things I read are so sad that it's hard to stay hopeful. This week, for some reason, has been particularly hard because there has been news of several young, very young, people with CF who have lost their battle. I'm trying to stay strong for Seamus but it's very hard.

I've decided to take a couple days off from blogging and reading anything related to CF. I know there is a lot more to our life than this disease and I need to clear my head and think about those other things.

65 Red Roses Documentary

2009-04-08T12:58:00.002-04:00

For a long time, I've been following the blog of Eva, a young CFer who had a double lung transplant last year. I use the word amazing a lot but she truly is amazing. She just got her documentary accepted at the Toronto HotDocs film festival, which is a huge, huge deal. Please check out the trailer below and help spread the word.

Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva Markvoort and her two online friends who are all battling Cystic Fibrosis (CF) - a fatal genetic disease affecting the lungs and digestive system.

Unable to meet in person because of the spread of infections and super bugs, the girls have become each other's lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours are over. Now at a critical turning point in their lives, the film travels the distance the friends cannot go themselves, capturing the compelling and often heartbreaking realities they face, just trying to take each breath.

Endoscopy

2009-04-06T16:55:00.003-04:00

We had to be at the hospital at 6:30 this morning for Seamus' endoscopy. Things went well and the doctor declared his GI tract looked "pristine". You can't get much better than that. We have to wait about a week for the biopsy results but he didn't expect to find anything.

This was about the 5th endoscopy Seamus has had so we're used to the routine but it's never easy walking him back to the operating room and watching them put him under. He usually recovers pretty easily but the last time he had this done, there was a big mix-up in the recovery room and they put him about a foot away from a teenager with CF, they literally could have reached out and touched each other. I heard the kid coughing like crazy but I assumed it was from the anesthesia. When I heard his doctors talking about Pulmozyme and Tobi, and telling him "all the gunk in his lungs had gotten stirred up" during the surgery, I freaked out. Of course, they wouldn't tell me what he had but I knew and I couldn't get the nurses to move him because they didn't understand about CF. They actually told me "Don't worry, he can't catch it." It was obvious the kid next to us was very ill and I had no idea what he had growing in his lungs and coughing out into the air Seamus was breathing. There's a reason they want CF patients to stay three feet apart. Finally after calling the director of the CF clinic, who was speechless, and said this was a huge mix-up, we got Seamus' bed moved across the room.

This time was much better but it will never be easy seeing him laying in that hospital bed.

Jokes

2009-04-03T20:40:00.004-04:00

Seamus loves jokes. The "Guess What? Chicken Butt!" joke has now turned into penguin butt, rhinoceros butt, and every other kind of animal butt.

His other favorite thing to repeat over and over (not really a joke but funny): "Fuzzy Wuzzy was a bear. Fuzzy Wuzzy had no hair. Fuzzy Wuzzy wasn't fuzzy, was he?"

Tonight Uncle Woody called and told him a good one: "Why was six afraid of seven?" "Because seven eight nine." (Say it out loud)

Seamus rolled on the floor. His response was "I want to tell you the banana pants joke. Why was the apple afraid of the banana? Because he saw the dinosaur." No mention of pants. Well, he's trying.

Bedtime

2009-03-30T21:13:00.010-04:00

Seamus and I have a routine every night. He brushes his teeth, gets his pj's on and we read a bedtime story (or 4 or 5). Then we cuddle in my bed and chat for a little while until he's ready for his bed. These are some of my favorite times and something I hope he always remembers about his childhood.

Tonight, we read a Dora the Explorer book about the circus, then we named all the colors in Spanish, even all the made up colors like pink-blue and brown-white.

S: "Seamus is tired. Is Mommy sleepy? Is Pa sleeping in Heaven?"
M: "Yes, he is, Sweetie"
S: "What color is his plane?"

It took me a minute and then I remembered this conversation we had last summer.

M: "He's not in a plane, Honey. He's in Heaven."
S: "Heaven is in the sky, right? So he's in a plane. Why is he in Heaven?"
M: "He was very old and sick with cancer."
S: "Why was he old and sick?"
M: "Some people just get cancer"
S: "Will I get cancers?"
M: "No, Honey. Pa is happy now and he's not sick anymore. He doesn't need to use his wheelchair and he can dance."
S: "He can dance? Good." Then I heard him softly whisper "wheelchair, wheelchair".
S: "Mommy, how do you spell wheelchair?"
M: "W-H-E-E-L-C-H-A-I-R"
S: "Wheelchairs have wheels. What else has wheels?"

He rolled over on his elbows and looked just like Doris Day in Pillow Talk while we listed everything from cars to wheelbarrows. He thought of some good ones like skateboards and "sometimes, beds have wheels" and of course, planes.

I love how his brain works.

Tough Questions

2009-03-28T08:13:00.003-04:00

Seamus is feeling better. His cough finally went away and his culture from last week's clinic visit was clear!

Lately, Seamus has been very inquisitive and not about simple things. He has three friends who have pregnant Mommies. He knows that means they are going to have babies and he asked me the other day when we would have a new baby. He has also been talking a lot about his grandfather, Pa, who passed away last August. Seamus knows he's in Heaven and that he is watching us from up there but he asked recently "But what is Heaven?"

Normally, I would answer these questions with a very simple explanation, but that no longer seems to satisify him. It has started me thinking about how I'm going to handle the really tough questions about his health. He knows he has CF and needs to do his treatments and medicine to stay healthy and for now that's fine. But he's going to start to read soon and I don't want him to read something scary somewhere and think we were lying to him his whole life. I know there will be a cure in Seamus' lifetime but there is a lot of misinformation out there and I would hate for him to stumble across something that would frighten him.

For all the adults with CF out there, how did you find out about the scary facts of CF? Did you parents tell you or did you find out on your own? If the latter, how did it make you feel?

For any CF parents, have any of you had to deal with this yet?

Circus, Circus

2009-03-24T21:20:00.010-04:00

We had lots of fun at the circus. It's not at all what I remembered; it's now a giant production like a Broadway show. Seamus was in absolute awe. He especially loved the clowns and this crazy thing with seven motorcycles driving around in a little metal cage like in the Simpsons movie, but multiplied by seven and a much smaller cage.

Here's a video and a picture of Seamus in his new clown mask (kinda creepy):

Sunday, Seamus had a play date at our house with four of his friends. He was in heaven playing the little host and can't stop asking about when the next play date is.

Here's some more pix of Seamus playing with his Dudes and the letter magnets that he is addicted to. Also one of his new soccer class.

Good Clinic

2009-03-20T19:19:00.002-04:00

Today's clinic visit went well. Dr P said Seamus' lungs sound good and she thinks he probably caught two separate bugs which was why it seemed like he was getting better after being on Augmenten for 10 days and then getting drastically worse again. Hopefully the Omniceff will kick that soon. She was concerned that he has been getting out of breath which is new. She thinks he may have inflammation of his lungs since he's been coughing for 3 weeks so she put him on a 5 day dose of Prednisone.

But the best news was he gained almost a pound! That brings him back up to the 57th percentile. His height is still the 38th percentile but I think having a five foot tall mother has more to do with that then CF.

Tomorrow we're all going to the circus so I'll have lots to report!

Highlights of our week

2009-03-19T18:28:00.004-04:00

Since I've been so bad about keeping up with the blogging, I thought I'd give the highlights of what we've been up to:

- Doing extra "shake and bake" vest treatments to help fight off the cough Seamus' has had for almost 3 weeks.
- Losing lots of sleep; Seamus, because of coughing and Mommy and Daddy, because of worrying
- Switching oral antibiotics to no avail (we're finally going into clinic tomorrow)
- Having Wii parties with our friends (alive and stuffed)
- Making and eating lots of dairy free brownies
- Planning for a trip to Disneyland and Los Angeles
- Learning to play soccer at the Community Center
- Celebrating Ga's 67th birthday
- Taking bike rides with Daddy
- Spending lots of time at the playground and riding the scooter
- Celebrating St Patrick's Day, having fun but thinking about all the CF'ers in Ireland. Ireland has the highest case of Cystic Fibrosis in the world and yet the life expectancy of those with this disease is in the mid twenties because the quality of care is so poor.

Recent pictures and video

2009-03-09T19:36:00.007-04:00

Seamus and his ever-present Ketchup

Getting ready for the snow

With Miss Terri on Pajama Day

At the polka birthday party

With the Dudes

The latest moves
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Salt, CF Movie

2009-03-07T18:45:00.004-05:00

Thanks to Lil Chris' mom for posting about a new movie in production about CF called "Salt". The filmmaker, Max McGuire, is a 26 year old with CF.

Here's a synopsis of the synopsis:
At 21, the future is limitless. The universe fair, the horizon endless. At 21, we're thinking about that dream job looming at the end of college, how to afford that backpacking trip through Europe, or just when we'll finally meet her, the girl, fall into wild-blind love.

At 21, Will Valley isn't thinking about any of these things.

Will's thinking about the three hours of physiotherapy he has to perform that day, every day. He's thinking about the half-dozen tablets of Creon-20 he downed with his morning pancakes, and the two weeks he spent in the hospital last month, poked and prodded by a salvo of doctors. He's thinking about what it means to be a middle-aged man at 21.

Then in walks love one day, bringing sunlight. Her name's Hannah. She's wise to his defense mechanisms, immune to his ironic detachment, thinks his gritty repartee could definitely use some work. She's seen it all before, you see. Her older brother died of CF one year earlier. By now she knows the score.

"Doesn't matter if you live to thirty or three-hundred," she tells him. "Everybody thinks life's too short." So what are you going to do with the time that you've been given?

I'm looking forward to seeing a realistic portrayal of CF. Most movies and tv shows like to romantize illnesses and don't show the true everyday experiences, but this one should be different. Keep an eye out for it and spread the word!

Feeling Better

2009-03-06T11:51:00.005-05:00

The antibiotics finally kicked in late yesterday. Clinic had said to go ahead and bring him in today but by yesterday evening, his cough was much better and he slept much better. That is until the feeding pump incident.

He gets Miralax in 250 ml of water through his g-tube when he first goes to bed which needs to go in fast, 500 ml/hr. When that's done we switch him to his formula which runs all night at 65 ml/hr. Last night we accidently forgot to change the settings so in half an hour he had already gotten four hours worth of formula. He woke up screaming and vomiting all over the place. The poor kid can't catch a break. He was finally starting to feel better from his cough and then we go and pump his stomach until it's ready to burst. We felt so terrible.

This morning he was chipper as ever, so I think his stomach is okay. We called clinic and said we weren't going to bring him in after all.

Bad Night

2009-03-05T11:54:00.005-05:00

Seamus' cough has never been this bad. He was up all night coughing and choking on mucus and none of us slept at all The only time he was remotely this bad, he ended up on IV antibiotics in the hospital. He's been on oral antibiotics at home for just a few days so hopefully they'll start working soon. If not, they want us to bring him into clinic.

I read all the other CF mom's blogs and I know this isn't all that bad compared to how it could be. I give so much credit to the families who deal with pulmonary stuff all the time but for Seamus, it's really rare so it's really scary to me.

Most of the time, I'm in denial. There's not a minute in a day that I don't think about Seamus having cystic fibrosis but I've always had the "comfort" of knowing he "only has GI issues". I read the other blogs and think, "Thank God, that's not us" but last night lying in bed helplessly listening to him, I couldn't help thinking "Okay, is this the beginning? Has the lung damage started?"

I try to tell myself that I'm overreacting. Of course he'll be better soon and his lungs won't be permanently affected from this episode. But how long will that be true? As a CF parent, I cling to the hope that a cure will be found before his lungs are damaged beyond repair, but as I lay in bed at 1:00 AM and hear my precious son gasping to breathe between coughing fits, it's really hard to hang on to that.

Update

2009-03-03T15:02:00.006-05:00

It's been awhile since I've posted. I just haven't been in the mood, I guess.

I feel bad because Seamus' little cough has now turned into a huge hacking cough. We held off on the antiobiotics but now I think we waited too long. Since he rarely has any pulmonary issues, it really freaks me out to see him like this. He's bringing up lots of gunk but he still can't figure out the whole spitting thing so he ends up swallowing it. This morning he vomited tons of thick mucous. I'm glad he got it out because otherwise it ends up in his stool which is already sticky enough.

On a happier note, we had a nice weekend. We spent a lot of time making paper ties and hats for tea parties and Elmo's birthday party. He loves to line up his "dudes" on all the furniture with their fancy hats and ties on. Sometimes, you can't find a seat in the house because everywhere is covered with a stuffed animal.

We also had a great time at our neighbor, Emily's, 70th birthday party. It was held at Blob's Park which is a German Polka place. Seamus wanted to bring a "dude" with him so we told him he had to chose one. He picked Snoopy because "he's the best dancer." Seamus (and Snoopy) really got the hang of the polka and entertained the crowd.

Yesterday, we had our first snowstorm with about 7 inches. I got a snowday off from work so Seamus helped me shovel and sweep off the cars. Then we spent the afternoon cuddled up in bed playing Nickolodeon computer games. Not a bad way to spend the day.

Robot Seamus

2009-02-25T07:52:00.009-05:00

Seamus' List

2009-02-22T11:31:00.006-05:00

Christy at Color Me Healthy had a good idea. Because the CF blogging community has gotten so big, it's hard to keep track of who is dealing with what issues and what treatments everyone is on. She posted a list of a few things about herself to get people caught up. So here is Seamus' list.

1. He was born on September 28, 2005 with Meconium Ileus and spent 10 days in the NICU.

2. Because of amniocentesis, we knew before he was born that he had CF with mutations DeltaF508 and R542X.

4. He has been hospitalized 16 times with GI problems, mostly Distal Intestinal Obstruction Syndrome.

5. At 18 months, he had a pyloroplasty to widen the opening between his stomach and intestines and a g-j tube was placed in hopes of stopping his excessive vomiting and weight loss.

6. A year later, he was still vomiting almost everyday. Another endoscopy was done and he was found to have eosiniphilic esophagitis.

7. He is allergic to milk, soy, beef, and pork.

8. His daily meds are: Digestive - Miralax 1 capful thru g-tube/3x day; Mucomist, 2 mls/2xday, Vitamax 1 ml/2xday, Vitamin D3 15 ml/1 day, Prevacid 30 mg/2x day; Primadophilus Reuteri (probiotic) 1 tsp/1xday; Flovent 110mcg 2 puffs without spacer/2x day; Pancrecarb MS-4 9 with meals and before and after tube feeds. Respiratory - Flovent 44mcg 2 puffs with spacer/2x day; Pulmozyme 2.5 ml neb/1xday; Chest Percussion Therapy via InCourage vest, 30 minutes/2x day.

9. They switched his g-j tube to a g-tube 6 months ago. He gets 8 hour feeds each night and is still struggling with weight gain.

10. Seamus loves being around other kids, probably because he is an only child.

11. He loves pre-school, the Wii, Spiderman and SpongeBob.

12. He is an amazing kid and is always concerned about others. Everyday, he inspires me to be a better person.

13. His favorite joke: "Guess what?" "Chicken Butt!"

CF Appt

2009-02-21T16:48:00.004-05:00

Yesterday, Seamus had his CF appointment. The timing was good because I've been sick all week with a sinus/bronchitis thing and thought it would be good to get him checked out.

The good news is even though his nose has been running like crazy, his lungs sounded fine. Dr P gave us a prescription for antibiotics in case it turns into a "serious" cough. He coughs in the morning a lot but I think that's from post-nasal drip so we haven't filled the prescription, but what if I'm wrong? It's so hard to judge when we should be cautious and give them to him to try to avoid any lung damage at all or hold off on the antibiotics so he's not resistant to them later on in life when he will definitely need them.

The bad news was the dreaded weigh in. He didn't gain any weight again. When he got his feeding tube put in two years ago, he was down to about the 20th percentile and after being on it a few months, he jumped up to about the 80th percentile. He's been slowly heading back down and now he's at the 51st. That's not really bad but that's with being hooked up to a feeding tube eight hours a night! I can't imagine what would have happened if he didn't get it put in. We're going to increase his feeds at night and hope that helps.

Because he's getting taller without gaining any weight, he looks a lot skinnier and pants that used to fit are now falling off of him. Literally. We were in the subway station last week on our museum adventure and he said "Ohhh". I looked down and his pants were around his ankles. The funny thing is I had on an old skirt with an elastic waistband that's all stretched out. Right after Seamus lost his pants, I felt something funny and realized my skirt had fallen down to my knees! And there were people walking right behind me! We went to dinner and I had forgotten about it (I don't how I could) but when we walked back to the station, it happened again! I guess you can call us the Flashing Colemans.

Valentines Day 2009

2009-02-16T12:53:00.009-05:00

I woke up this morning with a scratchy throat, feeling achy and congested in my chest and sounding like Scarlett Johannson. I decided to stay home not so much because I felt bad but didn't want to spread anything around my office. It's a weird kind of feeling, it doesn't really hurt to breathe, but it definitely takes more of an effort to take a deep breathe and I'm very phlegmy. I wonder if this is how Seamus feels every day and thinks every one else does too.

We saw a really good movie this weekend, Nick and Norah's Infinite Playlist. On the surface, it's about some teenagers running around New York City looking for an underground concert but really it's about the two main characters looking for more out of life and finding each other. At the end (Spoiler Alert!), they don't end up seeing the concert and Norah says to Nick, "I'm sorry you missed it". He replies happily, "I didn't miss it, this is it." That's my new motto.

We had a very adventure filled weekend. I had a meeting in downtown DC which let out early so James and Seamus met me at the Natural History Museum. Seamus loves it there and we thought he was ready to handle the 3-D Dinosaur Imax show. Well, he disagreed. We went in with our 3-D glasses and as soon as the first meteor came at us, he yelled "This is scary. I should not be here." We left and got a refund and went to the butterfly exhibit instead. It's a big greenhouse with tons of butterflies flying around landing on people. Then we went to the American History Museum and saw the old trains and cars. We ended the day eating at a little French bakery where Seamus ate more food than I've ever seen.

Saturday was Valentines Day and we spent the day decorating cards and going with Ga to the University of Maryland to take pictures to share with her friends back home on her blog. He had celebrated V-Day at school on Thursday and loved the whole idea of it. All day, he kept wishing us all Happy Valentines Day. He told me when the sun went down it would be Valentines Night so then he kept wishing us Happy Valentines Night.

Sunday we went back downtown to the National Building Museum which has a Kid's Building Zone, where Seamus played with huge Legos and other building blocks. Of course, I ran after him with sanitizer all day, but still with all the exposure he's had lately, I'm surprised he's not the one sounding like Scarlett Johannson.

Valentines Day E-cards for CF

2009-02-11T11:40:00.003-05:00

Alicia at Experiencing Each Moment has a great post today about a fundraiser for CF. Thanks, Alicia!

Today is a beautiful day in MD. The weather is almost 70 and sunny. Seamus is spending the day with his Ga riding his scooter and bike.

2009-02-09T17:00:00.001-05:00

Last week was looong. It started out with James being stuck in bed for two days with the stomach flu which he then passed on to me. Seamus may have also gotten it but it's so hard to tell if it was a bug or his GI stuff acting up. He never really complained, but he never does. He's had a runny nose all week so we're crossing our fingers it doesn't turn into a cough.

Tuesday was pajama day at school and Thursday was picture day. On Friday, he had a Wii date with his friend Zoe. It's like a drug he wants to share with all his friends.

Saturday night was the big Poker tournament for Seamus' nursery school. I've seen poker on tv but have never played so I wasn't expecting too much. Guess what? I won the whole thing!! Seamus was so impressed and loves the trophy.

Sunday we went to a birthday party with all his friends from school at "Pump It Up", one of those places with all the moon bounces and slides. Seamus absolutely loved it but I spent my time being a nervous wreck chasing him around with hand sanitizer.

I guess I'm a little down today because being in those situations is always a reminder to me that Seamus is different than most kids. He can't just run and play without worrying about germs and he couldn't have the pizza and cake because of his food allergies. Also, parents were talking about summer camp at the nursery school and I don't think Seamus can do that either. They stay out all day playing in the sand box and water table which are both breeding grounds for mold. And forget about getting dehydrated and running around in a bathing suit with his feeding tube sticking out.

I'm sorry, I've said this blog is supposed to be about recording the good times but for some reason today, I'm having a hard time with that. I really do recognize how lucky I am. Seamus couldn't be a happier little kid and once I get home and see him, things will be better. They always are.

story

2009-02-09T10:27:00.003-05:00

I'm planning on writing a long post later but Google Alert brought up this story today and I had to share it. Stories like this always set me off imagining the future Seamus will have. I'd better warn you, it made me cry. (Sorry, Courtney)

Cystic fibrosis brought them together, now keeps them apart

Garran Update

2009-02-03T18:32:00.002-05:00

Garran had his transplant surgery last night and things are going very well. His mom posted they were going to have him up and walking this afternoon.

I've also been thinking a lot about the grieving donor family. Someone lost their little daughter or son yesterday. I hope it's possible to find some peace in knowing another small child was saved. As a mother of a child who one day may need a transplant, I thank you from the bottom of my heart.

G-man

2009-02-02T14:11:00.002-05:00

Garran is a great 7 year old kid who has been very sick and on the lung transplant list since last July. Today they got the call and are heading to the hospital right now!

Please pray and think good thoughts for him and his family today.

So Proud

2009-02-02T13:03:00.003-05:00

I know I brag a lot about Seamus, but hey, it's my blog. Today, James and I met with Miss Terri for a parent teacher conference and now I feel like I'm not just a biased mother.

Miss Terri says Seamus is very independent and figures things out on his own. There is not a puzzle in the class that he has not mastered. He is always willing to help the other kids and Miss Terri, and he is great friends with all of them. If someone is hurt or upset, he's the first one there. He is especially popular with the girls because he is so caring and gentle, unlike most of the other boys. They fight over who can hug him and sit next to him at circle time. (We discussed the germ issue and she's already on it.) He can also count backwards from 10 and knows all his letters and numbers.

I'm so proud of him I could burst. Because he's an only child, I'm especially happy that he can make friends and get along with others so easily. That will be very important growing up. But I'm most proud that he is so caring and kindharted. CF is a horrible disease, but I believe a big part of who he is today has come from all that he has gone through in the past three years. Being in the hospital so much and seeing other sick kids has given him a different perspective than most kids.

I love you, Seammy Doo, so so much and I can't believe how lucky I am.

Snow Day

2009-01-29T07:09:00.007-05:00

We finally got some snow! Actually it was more ice than snow, but it was fun. Here are pictures and a couple videos from our winter walk.

The Dudes

2009-01-26T21:11:00.008-05:00

We spent the weekend playing Lite Brite, taking walks, going to the movies (Hotel for Dogs for Daddy and Seamus and The Curious Case of Benjamin Button for Me and Ga,) and hanging out with the Dudes, a lot.

You can download different Mii characters that other people have made into your own system so now besides the four people who live in this house, Spiderman, Scooby Doo, Mickey Mouse, Tigger and a slew of others also play Wii with us. Seamus calls them his Dudes.

Yesterday, I finally tore him away from the Wii and we decided to have a tea party. He invited some of his stuffed animal friends (also called the Dudes): Barney, Curious George, Spiderman, and Andy the Handyman. Seamus knew tea parties were fancy so he asked me to wear a dress. When he said he wanted dresses for all the Dudes, I told him boys wear suits and ties so we invaded Daddy's closet.

I have a potty training story, so I'm warning you, if you don't have a toddler, you might want to skip the rest of this post. As I've written about in earlier posts, Seamus has been making great progress but CF really throws a wrench into things, as many of you are aware. He goes through phases when he's getting blocked up and he won't poop because it hurts too much. Then so much pressure builds up...

We've started a funny little thing that has helped and maybe it will help somebody else. At least I think it's a funny story to tell his kids one day.

One day he was sitting on the potty not going but I could hear his stomach churning so I knew he had to go. I said "Your poop is saying "Let me out of here, I want to get out""

After giggling a little, he was able to go a small amount and said "Now what's it saying?"

"Woo hoo, let's have a party. And the poop still inside is saying "I want to party too, let me out!"

He kept going and wanted to know what they were all saying so I started singing all the songs about parties I could think of.

So now every time he goes we sing party songs, like "Let's Get it Started in Here" by The Black Eyed Peas, and "Get the Party Started" by Pink, and "Who Let the Dogs Out."

I'm running out of song ideas. Anybody have any good suggestions?

Inauguration

2009-01-24T14:53:00.004-05:00

I've been meaning to write about the Inauguration. We live just a few miles from the Capitol building but we decided it was going to be too crazy to try to go down there. I watched it on tv with Ga and Seamus and Daddy went to a neighborhood party to celebrate.

Seamus has known about Barack Obama for a long time. I didn't know how much to get into it the importance of the occasion with him because as far as he's concerned there's nothing that needs to be discussed. He sees absolutely no difference between Obama and any other man so of course he could be president. We live in a very diverse area and Seamus has friends of all colors and ethnic groups. He has good friends who have parents from El Salvador, Nigeria, Latvia, and Korea.

He did understand something big was going on when Pete Seeger started singing "This Land is Our Land" at the concert at the Lincoln Memorial and Mommy and Daddy were both crying. (That was awesome, wasn't it?) He came in sat in my lap and said nothing, which is very difficult for a three year old.

One day we will talk about the significance of the first African-American president and what that means for all of us but for now, I want him to hold onto his innocence and to believe anyone truly can be what they want to be, including kids with CF. I can learn a lot from a three year old.

Thanks for the Award

2009-01-22T16:41:00.003-05:00

Courtney, Tooter's Mommy has given me a blog award! I am to send it to my new blog friends, and they are to pass it along to their new blog friends. It should go to those who step outside their comfort zone, and make new bloggy friends.

I send it to:
Marcus at RT Student Blog who doesn't have CF or have a family member with CF but has quickly become a friend to many in the CF community. He is getting the word out and raising money for us all.

My mom at Donna and Terry's Adventures in Maryland who is definitely out of her comfort zone. She is not very tech-savvy but has jumped right into the blogging world. She's had a tough year and I'm very proud of her.

From the Brain of Seamus

2009-01-19T19:32:00.002-05:00

"I have a brain."

"You sure do, honey, a big brain."

"If somebody climbed into my ear, they could go for a ride on my brain."

Can't argue with that.

Ladies' Man

2009-01-16T09:30:00.003-05:00

At first I thought this was cute, but the more I thought about it, I think it's a real problem.

Seamus is so cute and charming that all the girls at pre-school keep kissing him. They fight over who can get his coat for him when they go out to the playground.

I'm no prude so the kissing itself doesn't bother me and I'm glad he's so popular but they are germy little three year olds! We've fought hard to get the school to understand the importance of hand washing and keeping Seamus shielded from sick kids but I don't know what they can really do about this.

He's too young to understand and he likes the attention. I can see this is just the beginning for my little ladies' man.

Dealing with questions

2009-01-14T11:17:00.005-05:00

I was reading another CF mom's blog yesterday. Her 5 year old daughter has started asking questions about CF and why she has to do her treatments every day. The mom's not sure how to handle them.

I suggested this book, Little Brave Ones:For Children Who Battle Cystic Fibrosis.. It's written from a little girl's point of view who has CF. There are lots of pictures of her doing her daily routine as well as other kids with CF from all over the country, having treatments but also just being regular kids. Seamus loves it because he knows they are real kids just like him. We talk about how some kids, like Krista from the book and him, need to do certain things that others don't to stay healthy.

We also spend time surfing the blogs. There is a great community of CF families who blog. I used to think it was a great support for James and me but now I realize, Seamus can get a lot out of it too. He loves to see pictures of Samantha, Phoenix, Lil' Chris, Olivia, Seren and Dylan, and lots of others. So keep up with the pictures, CF bloggers. Seamus loves it!

Quiet

2009-01-13T15:48:00.005-05:00

Not much going on lately. Seamus had another home clean out last week and an appointment with his GI doc. He has some concerns that the flovent treatment he's been on for his EE for almost a year is now causing fungal esophagitis. His episodes of DIOS seem to be happening more frequently, and although his food allergies and EE aren't directly related to his DIOS, anything that affects his upper GI tract seems to have an impact on the lower GI tract too. He has to confer with Seamus' allergist but it looks like another endoscopy is in the near future.

Although Seamus still mentions that pooping hurts and has a stomachache most of the time, he still is in pretty good spirits. He went back to school today which makes him very happy. It's really easy to make Seamus happy. I wish I could have the same attitude.

Finally, Christmas pictures

2009-01-06T22:00:00.006-05:00

We finally got our computer back so I could upload the pictures from our camera.

I also wanted to post about New Years. The four of us went to dinner and then Ga went to church so the Colemans had a little celebration at home. We all made hats (that seems to be a big thing lately) and had sparkling grape juice in wine glasses. Seamus really liked his glass because when we went around and made toasts about things we liked, he kept saying "Here's to Cups!" Then we all clinked our glasses and said "Cheers!" After about ten rounds of that with increasingly harder clinking, we had a little countdown and he went to bed in his brand new big boy bed. He really felt like a big kid.

On Saturday, we had a big party to celebrate our new addition. Seamus was in heaven again. He just loves being around people and being the center of attention. He's such a ham.

Breath-ing

2009-01-05T10:45:00.004-05:00

It's been a while since I've posted because we've been very busy at our house. We had a nice New Year's, not very eventful, and then on Saturday, we had a big housewarming party to celebrate the new addition to our house finally being done! I'll post more about those later, with pix, but I wanted to write a quick post while yesterday was still fresh in my memory.

The last couple days have been rough with Seamus' GI issues. His DIOS symptoms (Distal Intestinal Obstruction Syndrome) are back again even after spending a night in the hospital three weeks ago for a clean out. Even though he has not been feeling well, we needed to get out of the house. We decided to go on an adventure yesterday to a local nature preserve that has lots of trails where he could ride his scooter.

It was a short car ride but he was very tired by the time we got there. After riding his scooter for about 5 minutes, he was exhausted so I started carrying it. I noticed he started to lag behind so I said, "Are you too tired?" and he responded, "No, I'm just happy."

The air felt really good so I showed him how to take a deep breath through his nose and let it out with a deep exhale through his mouth. He liked the feeling of the cold air so he repeated it over and over saying "The fresh air is nice. I'm breath-ing."

As I watched my beautiful boy, I literally lost my breath knowing I could never take this simple act for granted. "Breathe, my love, breathe."

Christmas 2008

2008-12-27T17:52:00.003-05:00

Christmas was great. Seamus oohed and aahed over every present, at least until he got to the socks, "Ohhh, socks." He loved his stuffed Spiderman who talks and even snores, the Wonder Pet stuffed animals who have been attached to his side, the Hungry, Hungry Hippos game (thanks Uncle Woody and Aunt Chris) and his Honey Bee game which is just a bee on a stick that you jump over as it revolves around. He's been playing that for three days and the "Flight of the Bumblebee" is quickly becoming my least favorite song. He also got a set of plastic food and dishes because he loves to play restaurant. For months he's been taking our orders and delivering invisible food. Now he can actually give us "real" pretend food.

Mommy and Daddy got a new great big tv from Ga which will be great to play the Wii on. It was nice but also sad, especially for Ga, since it was the first one without Pa.

But the big news is Seamus has been wearing big boy panties since Wednesday! He said he didn't want to wear diapers anymore and he's doing great. There's only been a few accidents and with all the liquid we push through his g-tube all day, that's really amazing. Today was the first time we went somewhere while he was wearing underwear and it went well. Tonight he's been having some of his GI issues and asked to wear diapers so it will be slow going but we'll get there.

My little cutie

2008-12-24T10:51:00.004-05:00

Our computer hasn't been working at home so I haven't been able to upload any new pictures but these are ones we had done last month. I also stumbled upon some we had taken in the Spring of 2007. I can't believe how much he's grown in just a year and a half.

2008-12-22T12:04:00.007-05:00

We spent almost all weekend at home. I don't think Seamus is feeling up to par yet. Yesterday, he and I were going to have an adventure to see the National Christmas Tree by the White House. I thought he'd be all excited to see the "giant tree" but he really just wanted to stay home and play with his cars and the "tunnel" our builder gave him from the roll of flooring (it's like a 6 foot long paper towel tube.)

Right before we were to leave, he was fussing around so I warned him "If you don't get ready right now, we won't go see the tree." His response was "Okay, we won't go." I really wanted to see it but what can you say to that.

A little while later, James asked him if he was going on an adventure with Mommy and he said "I'll meet her there." James said "You might get lost if you don't go together." Seamus came and found me and said "Mommy, you don't have to go by yourself. I'll come with you," like he was doing me a favor, which I guess actually he was.

On the car ride there, he kept saying he was sooo tired. When we were two blocks away from our destination, I looked in the backseat and he was out like a light so I headed home.

So much for our big adventure.

2008-12-20T18:18:00.007-05:00

Seamus had his clinic appt yesterday and things went really well. His cough has worsened since he was in the ER but Dr P said his lungs sounded fine. She put him back on antiobiotics just in case though. He gained a little under a pound, which is great considering he went without food for almost 2 days earlier in the week. He's also taller and his BMI went up a little.

But the greatest thing, as far as Seamus is considered, is the present Santa left for him, the Go Diego Go! game for the Wii. He would have gotten it at the party last weekend but he was too sick to go. Santa left it at the clinic for him instead. It's awesome! We only got it yesterday but we've already played it for about 5 hours. I would highly recommend it for any toddler because it's very active but not too hard to figure out. He told me he wishes Diego could come out of the tv and play with him.

We're home

2008-12-17T13:18:00.004-05:00

Seamus was finally admitted at 2:00PM yesterday after being in the ER for 18 hours. By 7:00 PM, after being on Go-lytely for 21 hours, he was pronounced clean and was discharged.

He's thrilled to be home.

2008-12-15T22:49:00.004-05:00

I'm writing from the ER where Seamus is in the midst of a clean out. They want to admit him but the only room available was a shared room so we all decided it was better to stay in the ER for now where we have a private "room." Hopefully, tomorrow they'll find us a single room on the floor.

I'm not a doctor but I've sure seen enough x-rays to know he's pretty blocked up. They clean him out with Go-lytely which is what we do at home, but here they can give him huge doses and monitor his blood levels. Sometimes it takes days and days of the stuff. This is the first time he's really cried and complained of pain so we know it must be really bad. Usually when we are here he's happy and laughing so no one can believe how bad off he is, until they see the x-rays, but this time they really believed it just looking at his face. Instead of asking the kids how they feel on a scale of 1 to 10, they use a pain scale with little faces on it and ask the kids to pick the face that looks like how they are feeling. Seamus went right for the "10" face with a frown and tears streaming down. It made me cry because I had no idea he was in that much pain.

Please keep Seamus in your thoughts and prayers tonight.

Quick Update

2008-12-15T09:47:00.006-05:00

Seamus is getting x-rays today. I'll keep you posted if he ends up being admitted.

I don't know what it is about December but if he goes back in, this will be the 4th year in a row that he's been in the hospital right before Christmas. I'd hate for this be our family tradition.

2008-12-13T17:24:00.005-05:00

Today was a good day. We started out getting our Seamus' new playroom all organized. He was a big help and loves to help vacuum. The house is finally starting to get in order.

Our friends from music class, Isabel, Sam, and Gigi, came over this afternoon for a playdate. I'm very proud of Seamus for being so good at sharing his toys. He even gave one of his old baby dolls to Isabel's little brother, Oliver.

Then we all went to our town's Holiday Festival. Everybody got their faces painted (Seamus got a nice Xmas tree on his cheek) and we saw the big guy. Seamus had a lot to tell him and just want on and on but Santa wasn't too interested. He barely said a word to any of the kids and kept taking off his beard. What the heck, Santa? Seamus didn't notice his lack of enthusiasm and thought he was just great.

We also had been invited to an Xmas party Johns Hopkins puts on at the airport with Santa flying in but Seamus wasn't up for it. It's a big deal, someone has to actually nominate you from the hospital but he's still complaining about his tummy hurting and the blockage is getting worse so we didn't want to go too far from home. His cold has also gotten worse and lots of the kids at the party are really sick so I didn't want to expose them to anything.

Tomorrow we're going to try to bake some cookies and gingerbread but I think we'll be doing a lot of resting too.

Pressure

2008-12-09T13:27:00.004-05:00

The whole Santa and present thing is all a little too much for Seamus to handle. We talked about the naughty vs nice thing a few weeks ago in a very short conversation and we realy don't talk about it all the time but Seamus has become obsessed.

He's constantly talking about being a naughty boy and if James or I raise our voice to him at all, he'll break down crying and say "I'm a good boy, not a naughty boy." He puts himself into timeout even for things I wouldn't make a big deal of and gets all worked up, and he has, on a few occasions, woken up in the night, crying out "I'm a good boy, I'm a good boy."

It's really too much for him to handle. He's so sweet and sensitive and I feel very guilty. We reassure him as much as we can that he is good boy but I think we have to stop watching the Christmas specials and focus on other things.

On the health front, we did a home clean out treatment last week which helped somewhat but the last few days he's started vomiting again. I'm not sure which doctor to contact because he still has his cough, although it's much better, which is producing lots of sticky mucus that he ends up swallowing. His stools are already super sticky but now they are even stickier and he vomits because things can't go down because he's blocked below. So is it a GI issue or a pulmonary issue? We can try to get him really cleaned out but until he stops producing so much mucus, it will just keep happening. He has a clinic appointment next week. I hope we can wait until then.

Mugga Bugga

Surprise!

For Seamus

Catching up

Not okay

Thank you, Mary Kate

Beautiful

Conner

Striding

Snow bound

Snow, snow, snow

Quick update

Clean out

Oh boy

I'm back

Memorable week

Long time

Happy Birthday #4

Goodbye My Friend

Thanks

More Vacation pix and video

Home Again

Latest

ER visit again

Moon light

Why?

Not much to report

Deja vu all over again

Back to Normal

Day 4

Update from the hospital

Back to reality

Los Angeles Trip

Unexpected

I've got a golden ticket

Another g-tube question

Just cause...

New Song

Mommy laid up

Clean out

Pool Plan

Sensitive question

Seamus' Littlest Heroes Photo Shoot

Great Strides and Faeries

Mothers Day and Littlest Heroes

Clinic visit

Update

G-tube question

Heart

Again with the poop

Little things

Easter 2009 and Fundraiser

Taking a Break

65 Red Roses Documentary

Endoscopy

Jokes

Bedtime

Tough Questions

Circus, Circus

Good Clinic

Highlights of our week

Recent pictures and video

Salt, CF Movie

Feeling Better

Bad Night

Update

Robot Seamus

Seamus' List

CF Appt

Valentines Day 2009

Valentines Day E-cards for CF

story

Garran Update

G-man

So Proud

Snow Day

The Dudes

Inauguration

Thanks for the Award

From the Brain of Seamus